There are periods in anyone’s life, but especially in a quadriplegics life, that can be filled with darkness, despair, and hopelessness. It is in these desperate times that one has to dig deep to find some sort of meaning or purpose to keep going. Throughout my spinal cord career over the last 7 ½ years I’ve gone through several periods where I just couldn’t find a reason to keep going.

I happen to be going through one of these periods right now and I thought it timely to talk about what I’m going through, how I am working towards finding direction again, and strategies I am employing in my personal life to find small joys in every day.

As I wrote about in my previous blog our instructors did not let us know what adventure we would be partaking in until several hours before we headed out on an adventure. One of our first endeavors was taking a several day trip in these large wooden old-fashioned sailboats called Cutters.

Think of those old primitive wooden boats with giant oars that the Vikings used to row with. Well, somehow Outward Bound had constructed some of these boats with a very primitive sail. We packed up a minimal amount of gear and food into some dry bags, and were told to swim with our gear fully loaded to get out to the boat. I didn’t think this was a particularly brilliant idea because we were going to be soaking wet and freezing to start our adventure. I suppose this not only tested our physical endurance, but mental as well. We hoisted our shivering bodies into this old boat and listened to our instructors as they taught us how to navigate the waters in front of us. Fortunately I knew how to sail, so I was eager help my teammates learn how to how to a sail, understand wind direction, and navigate the oceans.

What we did not count on was no wind at all. We were not moving anywhere – we were simply drifting out to sea. Continue reading →

After receiving a slew of emails regarding my last blog on my wilderness survival trip in Australia I was asked to write another blog on one of my many wild wilderness adventures. So, today I will diving into my Outward Bound wilderness survival trip in New Zealand in 2000. My recollection of this trip came back to me when one of my old teachers from high school sent me a 5 page email I sent him and the family after my voyage giving a detailed account of all of my adventures. It was wild to read something I had written 18 years ago. Quite frankly I was appalled at my grammar, lack of spelling, misuse of commas, and poor grasp of the English language. 🙂

Regardless, after reading the email it took me back to this trip like I was there yesterday. There was only one surviving photograph from my trip 18 years ago (see below) … The rest of the photos I found pretty similar photos from other folks who participated in this New Zealand Outward Bound Trip over the years.

“The 17-year-old “Ali” with a look of utter joy upon completion of the trip”

Growing up in Europe and then transferring to school in the United States I ended up graduating early from high school. I decided to take some time off before heading to Occidental College in Pasadena, Los Angeles. I decided to embark on a life-changing experience to Beijing, China. However, when I graduated I had several months to spare before heading over to Asia and I couldn’t quite figure out what to do with my summer. I had been on previous adventure trips in my early teens, but none of them really offered me a test of my endurance and will.

I rigorously started researching different outdoor survival programs and came across Outward Bound. Outward Bound was originally founded to help troubled teenagers using trips into the wilderness to teach them responsibility, leadership, accountability, etc. Initially I had hesitations as I did not consider myself conventionally troubled, but I really liked the idea of a challenge. I went on their website, but you must remember in 2000 websites were still quite primitive, so I did not have that much information to go on, but I signed up for a trip as far away as I could possibly go. New Zealand was the winner!

When I graduated high school I went back home to the Bahamas for several weeks to start training because I read that there was a physical fitness test one had to pass upon arriving in New Zealand. Every morning the Bahamas I would wake up at the crack of dawn, run several miles in 90° heat, stripped down to my bathing suit into the crystal-clear Bahamian waters and swim for hours, do an ungodly amount of sit ups, push-ups, and whatever else I could think of. I was 17 years old and the time had come to fly 27 hours to the other side of the world. I wasn’t quite sure what gear I had to pack, so I packed light, and I was told what I needed would be provided for me when I reached my destination. Continue reading →

I’m often asked what keeps me going during those dark times, seemingly insurmountable challenges I constantly face with spinal cord injury, and how I remain determined to try and live a life that does not consume me with anger for everything I have been through. I must admit there are times when I do feel like giving up, but there’s something inside me that keeps telling me to push forward just a little bit more each day. I’m sure everyone who has dealt with tragedy in their life have their own coping techniques, but I attribute much of what I’ve accomplished to who I was before the accident.

You must remember I had 27 years of my life before I broke my neck and only 7 ½ years of being paralyzed. My parents raised me to always be curious, challenge the unknown, explore life beyond your comfort zone, and above all be kind to others. I was an extremely mischievous teenager, to say the least, but somehow I always managed to get myself out of uniquely perplexing situations before things went south. I like to think that I was “Responsibly Irresponsible.” I would plan out an adventure, write down all of the things that could possibly go wrong, how I would fix them, and then hope for the best.

To understand a little bit more about my nature I’d like to tell you a tale of one of my many adventures that would always bring me back to a path of serenity and focus when things were not going my way in life. I’ve always traveled around the world, much of it on my own, and I would find myself getting bogged down in life’s drama, people, the stresses of self-expectations I would constantly put on myself with respect to what I was hoping to accomplish by what age, etc. With this in mind, I started embarking on wilderness survival adventures around the world as a young teenager. As the years progressed I would find different wilderness adventure companies that challenged me physically, mentally, and really tested my strength of will in the wilderness for months on end.

At 23 years old I had just graduated from the University of Miami, could not find a job because, frankly, I was much too cocky for my own good, I started to get into drugs, and I just could not see a way out of life. Eventually, I made a decision to sign up for a very intense several month wilderness survival course in Western Australia, specifically the Kimberly Mountains.

On this trip I would be accompanied by 10 to 12 fellow hikers and one instructor. On these trips you learn to navigate the rough terrains of the Australian outback in degrees sweltering over 100° per day, carrying a 60-80lb pack on your back, hiking from water source to water source, sometimes killing your own food, navigating topographical maps with only a compass and no GPS, building leadership skills, and running into whatever dangers might be headed your way that day. I had already been on several wilderness adventures, but this was going to be by far the most challenging for me mentally and physically.

I purchased all of my necessary gear, did my research, and flew over 25 hours to reach my destination in Boone, Australia, which was located on the West Coast of the continent. I didn’t know what I was in for at that time, but I was eager to get my head on straight so I could find some clarity in life at 23 years old. I might’ve been having a midlife crisis of 23… Who knows 🙂 I arrived at a hostile the night before I was set to meet my team, and wrote in my journal about how I was feeling at that moment. I was feeling like a failure, low, curious as to how I was going to get my life going, I just broken up with a very serious boyfriend, and I had no idea where life was about to lead me.

Our Group on Day 1 before the Adventures Begin

I woke up bright and early at the crack of dawn the next morning, and met my team at the designated location at 6 AM in the morning. We went through a several hour orientation, were ordered to get rid of most of the things we had prepared to bring, and instructed to only pack what we were comfortable to carry for over eight hours a day. The packs normally ranged between 60 to 80lbs. There were, of course, a few items I stuck in my pack because I simply could not do without them. I was wearing contact lenses at the time, so I clearly needed to bring my contact solution, a little mirror, and antibacterial solution for my fingers. I refused to wear glasses … I don’t know why. I also snuck in a couple extra pairs of clean socks and underwear, and biodegradable baby wipes. We were supposed to dig holes in the wilderness when we had to use the bathroom and wipe our bums with leaves. I had done this on one of my prior wilderness survival trips, and let me tell you the amount of poison ivy I got in places where the sun does not shine was no joke! So, I stuck these little babies in when no one was looking 🙂 Continue reading →

When I think of Moving Mountains Paralyzed Insurance Companies the analogy of a Goat herder comes to mind. The Goatherder will watch out for its flock as long as it produces enough fur for the season for the goat herder to line his financial pockets. The moment the goat gets out of line or stops growing fur, the herder will slaughter the goat, and eat it for dinner.

Similarly to insurance companies … As long as you pay your premium and don’t step out of line an insurance company will offer you basic protection. However, if you start creating a commotion, appealing everything, and asking for more — insurance companies will find some way to slap you with financial bills that seem unimaginable.

Since my accident 7 ½ years ago I’ve been a goat that has been slaughtered by insurance companies and I have also been a goat that has managed to break free. Navigating the waters of insurance companies to get what you need, especially when you are paralyzed, requires voracious tenacity, extreme dedication, a lot of hard work, patience, and knowledge of how to work within grey areas.

I will preface this blog by saying for family and friends who do not want to know too much about my intimate sexual life you may want to skip the second half of this blog 😉

However, considering my blog is about Sex, sass and Spinal Cord Injury Adventures … I would be remiss not stay true to topic!

A majority of folks who sustain a spinal cord injury suffer from extreme chronic pain in many forms after their accident. Before I broke my neck I would look at somebody in a wheelchair and wonder what they felt? … I thought they couldn’t feel their legs or their stomach, etc. Boy was I wrong on so many accounts!

Many of us suffer from something called Neuropathic Pain. Essentially, it is nerve pain that manifests itself in different ways throughout the body 24/7. It’s almost like a cruel joke to be paralyzed and feel pain from the inside out. Regardless, this pain can result in feelings of pins and needles, burning fire, glass cutting you from the inside out, etc. It is different for every person.

Regardless, this chronic pain never goes away and can affect our daily lives with respect to productivity, quality of life, focus, and so much more. I find being paralyzed quite easy at this point in my SCI career, but you never quite get used to the chronic pain.

Personally, I suffer from 4 serious chronic pains at the same time, which can completely throw me off my game on certain days.

Neuropathic Pain from the chest down and in my arms – feels like burning pins and needles day and night

Hypersensitivity on my hands and forearms – feels like little shards of glass cutting me at all times

Neck Pain – from multiple surgeries I have scar tissue damage that prevents me from sitting up in my chair too long, and feels like someone is slowly cutting me with a butter knife on the back of my neck

Shoulder Pain – I suppose due to overuse it is a combination of nerve damage, musculoskeletal damage, myofascial pain, and soft tissue damage

Since my accident 7 ½ years ago I have always been on the mission to reduce my pain as opposed to finding a cure with respect to stem cell therapy for walking. I have tried so many techniques, of which two I find to be the most successful. However, the pain is always with me no matter what I do – although pain is just a signal from the brain, so I am convinced that if I keep trying I will be able to reduce it greatly on a permanent level one day!

I have tried:

Opioids – definitely not recommended as opioids just make you drown out life and they don’t actually work on the right receptors in the brain for nerve pain

Acupuncture

Electrical Stimulation Acupuncture

Neural Muscular Massage

Meditation/Hypnosis

Physical Therapy

Lithium Protocol – this one nearly killed me as it can be very dangerous

Sex

Distraction

Cold Laser Therapy

I’m sure there are few more I am forgetting, but I’m constantly trying to find new ways to reduce pain. The two most successful methods I’ve found in my life are Meditation/Hypnosis and Sex. I will dive into these two a little bit further.

MEDITATION / HYPNOSIS

Considering pain is just a signal from the brain hypnosis and meditation can be very effective, but only if you practice regularly, and are disciplined in your efforts.

I worked with a hypnosis instructor who helped me for over a year creating guided visualizations for me to listen to at 30 minute increments. Meditation is more challenging for me because when I sit quietly all of the feelings of pain are in the forefront of my mind. With hypnosis I find with gentle music in the background and guided instructions I use my mind to enter a world I created to reduce pain. It is kind of like a special room where enter through a red door and inside that room is a beautiful lake and ocean with clouds, beaches, and floaty toys. I’ve taught myself to look down at my body and leave my pain floating above. I know it sounds peculiar, but with years of practice it really helps reduce the pain on the days where the pain just seems unbearable.

Admittedly, I should practice every day, which I don’t do religiously anymore, but it is one of my 2018 resolutions to continue to rigorously get back into it.

I go into a dark closet, tilt my chair back, and listen to the recording. The burning feeling of pins and needles changes to a cool and relaxing feeling. It is hard to describe unless you practice this on your own, and it may be hard to believe that this actually works.

In the beginning I could barely sit still for five minutes, but that’s how you have to start. Try meditation or hypnosis for one minute, then work up to two, then three, etc. There are so many recordings online that you can download for free, and you have to find a voice that is soothing to you, which can relax you.

SEXUAL INTERCOURSE

The second most effective technique for reducing my pain, if you can believe it, is
SEX. Sex is a natural pain reliever — Sex causes increased production of oxytocin, which is often referred to as the “love hormone.” Before orgasm, oxytocin, released from the brain, surges and is accompanied by the release of endorphins, our natural pain-killing hormones.

When you are paralyzed from the chest down the feeling of sex is quite different than what used to be … It is not “Normal” in the sense of the way things feel. While I cannot orgasm in the traditional sense I still have my own type of feeling from sexual intercourse. Continue reading →

A little over 10 years ago BBC produced a television mini-series called “Planet Earth.” They spent five years filming unique exotic environments, plants, and animals all over the world. There was one episode where the film crew spent months in subzero Himalayan temperatures trying to film the endangered snow leopard. After many failed attempts they finally caught the snow leopard on camera for the first time. These leopards are so unique and not many exist, that we know of, in the world today.

An “SCI” (Spinal Cord Injury) Mom is an endangered species of human being, like that of the snow leopard, that are far and few between throughout the world. In general, the bond between a mother and child is so unique and unbreakable. When a child has a severe injury, such as breaking their neck, a mom goes into protection mode in order to provide the safest, best, and happiest environment for their child. However, not all moms are cut out to be SCI moms.

An SCI mom goes above and beyond, dedicates her life to her child, puts their needs above their own life, and puts up with more heartache than perhaps even the child going through the injury themselves. Generally a child starts fleeing the nest in their 20’s, starts their own life, and the parents move on to other adventures in their life because while their job is never done, the daily nitty-gritty caring aspect for their child is complete. With a spinal cord injury the reverse happens.

A dedicated and loving family member puts their life on hold once again to care for their injured child as if they were a baby, but it never ends. Continue reading →

I’ve often been asked what a typical day looks like for me as a quadriplegic (quad). While every quad is different I can confidently generalize that with being paralyzed and fully dependent one has to spend a minimum of several hours a day dealing with general spinal cord injury care. I can only speak to my personal experience, but over the last 7 years I’ve had to widely adjust my expectations about how much I can get accomplished in a day.

Regardless if you suffer from a spinal cord injury or not, one has to manage their expectations on a daily basis. If you are a mother of four small children or a high-powered attorney who has a full docket of cases to review with a family at home, how you manage your time is essential.

I am the type of person who likes to be extremely productive and utilize every moment of every day in order to learn something new, enjoy life, trying to things, and get things done. I have a full-time job, which requires immense attention on a regular basis. This does prevent me from getting out and about as I would like during the weekdays. However, this is my choice and professional productivity is very important to me. The challenge with being paralyzed is that you have to devote so many hours a day to general survival for your healthcare.

I was calculating out the amount of hours I spend on essential spinal cord injury care each day, how much exercise I engage in, how many hours I need to work, and most importantly, how this all fits in with my constant chronic nerve pain that feels like pins and needles piercing my body every moment of every day. Needless-to-say this can be challenging.

It turns out that I need about 4 hours at minimum to complete my bowel and bladder care, shower, getting in and out of bed, and general caregiving activities each day. I then exercise for about 1.5 hours a day. These are the essentials I need just to survive on a daily basis. The particular challenge with respect to my situation is with the chronic nerve pain that plagues me on a daily basis because my productivity goes way down mid-afternoon. This means I need to get in bed early, relax, meditate, and try to re-direct my pain in order to sleep well to be productive the next day.

I generally get most of my busy work done in the morning, work quietly until mid-afternoon, and then get in bed early. Over the years I’ve pushed myself to the brink of exhaustion, pain breakouts, and complete misery with trying to get too much done in a day. I’m not including the periods in life where anxiety or depression can take over, which can further drastically reduce one’s productivity in a day due to emotional up’s and down’s.

What a typical able-bodied person gets done in a workday of approximately 8-10 hours I have to get complete in no more than 4 to 5 hours. Continue reading →

The topic of caregiving is a very tricky one to navigate. This is an extremely sensitive topic for me and can be challenging for me to even write about.

I preface this blog by stating it is written from my personal and dozens of other spinal cord injury folk’s perspectives with respect to our experiences. As a quadriplegic, paralyzed from the chest down, I am fully dependent on another human being for my daily care from bathing, bowel program, catheter changing, dressing, cooking, etc. It can be tremendously challenging to have to rely on another human being to take care of you on a daily basis. But unbelievably heartening to know that there are people out there who dedicate their lives to wanting to help others.

Recently Aaron, my boyfriend, wrote an awesome article on Push Living Magazine talking about what it is like to date a woman in a wheelchair. It’s a pretty cool article, which you can read on: http://pushliving.com/dating-disabled-woman/

… The real question at the time was, did the chair bother me? Clearly, I am in love with the women, so, no it did not deter me from dating her. I suppose most guys have a million questions running through their head when starting to date a woman in a wheelchair, but when I met her, I didn’t see the wheelchair …I saw her…